Woman with paralysed stomach hasn't eaten anything for eight years

SWNS

A young woman with a paralysed stomach hasn't been able to eat or drink anything for eight years - and is fed through her heart to survive.   Liv Rose, 25, has struggled with stomach pain since the age of three but says doctors dismissed it as 'tummy ache'.  She struggled to eat anything other than bland foods - such as plain pasta or chicken.  Liv began vomiting undigested food but says her symptoms were dismissed for an eating disorder at first.  She was finally diagnosed with gastroparesis - when food passes through the stomach slower than it should - and pan-gut dysmotility - where the gut does not work as it should.  Now Liv has a Hickman line which goes directly into her heart so she can receive nutrition.

Transcript

00:00 I don't have to eat or drink and I haven't for the past 7 years now.

00:04 My name is Liv and I'm fed through this tube that goes into my heart.

00:09 I get all my nutrition and all my hydration intravenously.

00:13 This is called TPN and it does that to completely bypass my GI tract.

00:19 My stomach is paralyzed and none of my digestive system works as it should.

00:24 This means I can't digest food and it ends up making me very sick and causes me a lot

00:29 of pain.

00:30 I therefore get everything I need through this tube and it means that I can be alive

00:35 without taking anything orally.

00:38 I was wondering if anybody had any questions because I know this is quite an unusual thing.

00:43 It can be about my tube, it can be about my condition, it can be about what it's like

00:48 not eating or drinking anything.

00:51 Please feel free to drop some questions in the comments and I will do my best to answer

00:55 them for you.

00:57 Hi sunshines!

00:58 My name is Liv, I've got a paralyzed stomach which means I'm fed through this tube that

01:03 goes into my heart and I'm going to explain a bit about how it works.

01:07 So deceivingly it sounds like the heart is doing all the hard work but there's actually

01:12 an unsung hero you'll hear about in a little bit.

01:16 So the heart actually doesn't do all that much.

01:19 The line just needs to be in a big vein like a proper thick with several C's chunky vein

01:27 so that the line can stay in long term.

01:29 And one of the best veins is the ones that feed into the heart, these are your central

01:34 veins.

01:35 So the line goes into the heart like the tip of the line is in the tip of the heart so

01:41 it's in a big vein and it can stay in long term and like withstand the feed.

01:47 So all the heart does is pump the feed or the fluid whatever's going down there, it

01:53 pumps it through the bloodstream.

01:55 The bloodstream then carries everything to the unsung hero which is the liver.

02:02 The liver does all the hard work.

02:05 So my GI tract literally tapped out and was like you're on your own sis, like we're

02:10 leaving you to it, survive without us.

02:13 So my liver now does the job of what my GI tract should be doing.

02:18 It processes all the nutrients that go through my bloodstream and then it pushes any waste

02:25 into the kidneys and then it comes out of your body.

02:29 So it's the bloodstream that is used to feed me and the liver does the majority if not

02:36 all of the processing of that.

02:39 I hope that makes sense and I hope you understand a bit more now about how it works.

02:44 So I'm just popping back in to say this is called intravenous feeding.

02:49 Intravenous means through the bloodstream and sometimes you'll hear it abbreviated to

02:53 IV.

02:54 Hi sunshines, my name is Liv.

02:57 I've got a paralysed stomach meaning I can't eat or drink anything.

03:01 I get everything through this tube that goes into my heart and a lot of people wonder what

03:07 happens in terms of thirst.

03:09 So when I'm thirsty, the same way as you will have a drink, I will also have a drink

03:14 but I drink through my heart instead.

03:16 A bit extra, I know.

03:18 I'm on fluids today actually so this is what it looks like.

03:22 I personally don't take sips.

03:25 One because I can't tolerate anything in my stomach, it will make me sick.

03:30 And two, if I just have like, if I just swill my mouth out, I get the urge to down it, like

03:35 down water.

03:37 So zero self-control, not great.

03:41 When I do get a dry mouth, I have IV fluids and even though they're going through the

03:45 bloodstream, they do wet my mouth and throat.

03:48 If I'm really dry, I can use artificial saliva to help with that dryness but I find fluids

03:55 very effective.

03:56 But it was 17 when I stopped being able to eat.

04:00 I got my first feeding tube when I was 18.

04:03 It was an NJ tube so it went up my nose and into my intestines and I was fed that way

04:09 for about nine months and then I ended up starting TPN.

04:14 So TPN is the name of the feed that goes down this line and I started that a few weeks before

04:20 my 19th birthday and I've been on that ever since.

04:24 [ End ]

04:34 [BLANK_AUDIO]

04:44 [BLANK_AUDIO]

04:54 [BLANK_AUDIO]

05:04 [BLANK_AUDIO]

05:14 [BLANK_AUDIO]

Category

Transcript

Recommended